{"id":1560,"date":"2024-04-26T05:00:47","date_gmt":"2024-04-26T05:00:47","guid":{"rendered":"https:\/\/kolibrici.hr\/index.php\/2024\/04\/26\/obavijest-o-lijeku-spinraza-za-sma-2\/"},"modified":"2024-04-26T05:01:42","modified_gmt":"2024-04-26T05:01:42","slug":"obavijest-o-lijeku-spinraza-za-sma-2","status":"publish","type":"post","link":"https:\/\/kolibrici.hr\/index.php\/2024\/04\/26\/obavijest-o-lijeku-spinraza-za-sma-2\/","title":{"rendered":"OBAVIJEST O LIJEKU SPINRAZA ZA SMA"},"content":{"rendered":"<p id=\"isPasted\">Dana 30. lipnja 2017. g. predstavnici udruge \u201eKolibri\u0107i\u201c Ana Alapi\u0107, Vlatka Jarni Grma\u010da i Neboj\u0161a \u0160ajatovi\u0107, te predstavnica udruge \u201eKrijesnica\u201c Kristina Divi\u0107, na inicijativu udruge \u201eKolibri\u0107i\u201c pozvani su na sastanak u Ministarstvo zdravstva kako bi razgovarali o problemu lijeka Spinraza, te o dugoro\u010dnom rje\u0161avanju problema lije\u010denja skupim lijekovima.<\/p>\n<div dir=\"auto\" style=\"box-sizing: border-box; margin: 0px; padding: 0px; border: 0px rgb(0, 0, 0); font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-alternates: inherit; font-weight: 400; font-stretch: inherit; font-size: 17.25px; line-height: inherit; font-family: &quot;open sans&quot;, Helvetica, Arial, sans-serif; font-optical-sizing: inherit; font-kerning: inherit; font-feature-settings: inherit; font-variation-settings: inherit; vertical-align: baseline; color: rgb(0, 0, 0); letter-spacing: normal; orphans: 2; text-align: justify; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(248, 248, 248); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;\"><\/div>\n<p>Predstavnike udruga primio je ministar zdravstva Milan Kujund\u017ei\u0107 zajedno s drugim predstavnicima ministarstva i predstavnicima HZZO. Ministar zdravstva rekao je da \u0107e u narednih 5 do 10 dana biti osnovano Povjerenstvo koje \u0107e dalje odlu\u010divati o lije\u010denju oboljelih od spinalne mi\u0161i\u0107ne atrofije novim lijekom Spinraza.<\/p>\n<div dir=\"auto\" style=\"box-sizing: border-box; margin: 0px; padding: 0px; border: 0px rgb(0, 0, 0); font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-alternates: inherit; font-weight: 400; font-stretch: inherit; font-size: 17.25px; line-height: inherit; font-family: &quot;open sans&quot;, Helvetica, Arial, sans-serif; font-optical-sizing: inherit; font-kerning: inherit; font-feature-settings: inherit; font-variation-settings: inherit; vertical-align: baseline; color: rgb(0, 0, 0); letter-spacing: normal; orphans: 2; text-align: justify; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(248, 248, 248); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;\"><\/div>\n<p>Upoznali smo ministra s problemom nepostojanjem centra za lije\u010denje spinalne mi\u0161i\u0107ne atrofije, kao i s nepostojanjem registra oboljelih koji ovu situaciju dodatno ote\u017eavaju za oboljele. Kristina Divi\u0107 postavila je pitanje vezano uz dugoro\u010dno rje\u0161avanje problema financiranja skupih lijekova, te mogu\u0107nost osnivanja Fonda za skupe lijekove. Ministar zdravstva Milan Kujund\u017ei\u0107 obe\u0107ao je razgovarati s ministrom financija Zdravkom Mari\u0107em o osnivanju Fonda za skupe lijekove.<\/p>\n<div dir=\"auto\" style=\"box-sizing: border-box; margin: 0px; padding: 0px; border: 0px rgb(0, 0, 0); font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-alternates: inherit; font-weight: 400; font-stretch: inherit; font-size: 17.25px; line-height: inherit; font-family: &quot;open sans&quot;, Helvetica, Arial, sans-serif; font-optical-sizing: inherit; font-kerning: inherit; font-feature-settings: inherit; font-variation-settings: inherit; vertical-align: baseline; color: rgb(0, 0, 0); letter-spacing: normal; orphans: 2; text-align: justify; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(248, 248, 248); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;\"><\/div>\n<p>Iskreno se nadamo da \u0107e rje\u0161avanje ovih problema biti pokrenuto u najkra\u0107em mogu\u0107em roku.<\/p>\n<div dir=\"auto\" style=\"box-sizing: border-box; margin: 0px; padding: 0px; border: 0px rgb(0, 0, 0); font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-numeric: inherit; font-variant-east-asian: inherit; font-variant-alternates: inherit; font-weight: 400; font-stretch: inherit; font-size: 17.25px; line-height: inherit; font-family: &quot;open sans&quot;, Helvetica, Arial, sans-serif; font-optical-sizing: inherit; font-kerning: inherit; font-feature-settings: inherit; font-variation-settings: inherit; vertical-align: baseline; color: rgb(0, 0, 0); letter-spacing: normal; orphans: 2; text-align: justify; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: rgb(248, 248, 248); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;\"><\/div>\n<p>Ana Alapi\u0107<\/p>\n<p>predsjednica udruge \u201cKolibri\u0107i\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dana 30. lipnja 2017. g. predstavnici udruge \u201eKolibri\u0107i\u201c Ana Alapi\u0107, Vlatka Jarni Grma\u010da i Neboj\u0161a \u0160ajatovi\u0107, te predstavnica udruge \u201eKrijesnica\u201c Kristina Divi\u0107, na inicijativu udruge \u201eKolibri\u0107i\u201c pozvani su na sastanak u Ministarstvo zdravstva kako bi razgovarali o problemu lijeka Spinraza, te o dugoro\u010dnom rje\u0161avanju problema lije\u010denja skupim lijekovima. Predstavnike udruga primio je ministar zdravstva Milan [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1536,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/posts\/1560"}],"collection":[{"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/comments?post=1560"}],"version-history":[{"count":1,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/posts\/1560\/revisions"}],"predecessor-version":[{"id":1697,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/posts\/1560\/revisions\/1697"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/media\/1536"}],"wp:attachment":[{"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/media?parent=1560"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/categories?post=1560"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kolibrici.hr\/index.php\/wp-json\/wp\/v2\/tags?post=1560"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}